Life with Chronic Illness

Over the past 8 years, I have spent a few Aprils blogging every day for Cushing's awareness.  I will not be blogging daily this year, but don't want to let the month go by without spreading some awareness! April 8th is Cushing's Awareness Day because it is Harvey Cushing's Birthday.  Harvey Cushing is the father of modern neurosurgery, and he also was the first to discover Cushing's Disease in one of his patients.  You can see a drawing of his patient (Minnie G) in many text book articles about Cushing's. (From Cushieblog.com linked below) Here are photos of me that show all the visible changes Cushing's causes: Before Cushing's (I was about 12-13 in this photo) With Cushing's (a month before diagnosis) After! (Taken just a week ago) If you want to know more about Cushing's Disease, these are links to past blog posts and other resources. Cushing's Support and Research Foundation Your favorite posts: 10

Happy 2018!  I hope this year is a good one for everyone.  2017 was not the best year for me, and it seems like a lot of people relate to that, either for personal reasons or global ones. 2017 started off with me being in the second month of unemployment.  I had just been denied social security disability for the first time this go around, and was feeling sicker than ever. Over the last year, I've faced more challenges than I ever thought I could, and somehow made it to where I am today. In 2018, I'm looking forward to finally being approved for disability.  I am also looking forward to some resolved health issues, or at least next steps in figuring out what is wrong. I hope 2018 is a happy and (relatively) healthy year. Happy New Year!

I finally have a hearing date, and am so excited to (hopefully) be done with this long process.  I started applying for social security disability over a year ago.  I have had to appeal twice, and finally had to request a hearing. There have been many times over the past year when I considered just giving up. Unfortunately, so many people with chronic illness have to go through this process here in the United States.  You would think over 3,000 pages of medical records for a 31-year-old is enough proof that something is wrong.  Or that letters from friends, family, and doctors might be enough.  Or maybe the number of conditions I have to deal with.  But no, it's never enough. Instead, over and over, I have had to explain my medical history to no less than 10 different people, whether it's someone at the social security office, or to get the type of health insurance that will allow me to keep seeing my  numerous  specialists, or to help prepare my attorneys so they can

I have had journals over the years, but never really got into the habit of writing in them on a regular basis.  For me, one of the most therapeutic things when I am feeling down is to write.  It helps me to process whats going on, and to get out those feelings of sadness, anger, frustration.  Sometimes this writing has even taken form in emails sent at 1am to people who may not understand, but can be there for you, no matter what. But, I found one I like, and it's an app!  It's called the Five Minute Journal .  It's also available in a paper version , but I like how convenient it is to have it on my phone.  Every day when I get up, and every day when I get in bed I try to write in it. In the morning, it asks you to write down 3 things you are grateful for.  For me, this list stays pretty constant - my mom and Huck are almost always on that list!  It also asks "What will I do to make today great?" This is a harder one for me.  There is also a section for daily

The last month has had a lot of ups and downs for me.  I got to see a lot of people that I care about, but also was very challenged by my health. Highs: I got to see one of my best friends when he was in Boston for a few days!  We were able to go out for lunch and catch up.  We don't get to see each other often, so it was a nice surprise that we were in Boston on the same day! I went to Martha's Vineyard for week with a few friends.  I had a lot of fun, and spent a lot of time relaxing on the beach.  It's always my favorite week of the year. Lows: Huck was injured during a grooming appointment, which was very sad.  He was limping for a few days, and we had to give him pain medicine (prescribed by his veterinarian, of course).  He is still recovering, and isn't back to his usual bouncy self just yet. I am always struggling to breath these days.  I think the heat is contributing to worsening shortness of breath, but I also think I probably pushed myself a l

I have found it harder and harder to keep in touch with friends lately. I feel like it should be the opposite, with these smartphones in our hands 24/7, but I just feel more isolated. A big part of the problem it is that I live at least an hour away from most of my friends, if not more.  There's not a lot of friends that I can call last minute to say "Hey, want to do something?".  Any activity takes more planning, more effort on both sides.  I often hesitate to plan something too far in advance because I'm worried I might have to cancel if I don't feel up to it. I tend to plan more group events where I have the control, like yearly trips to Martha's Vineyard (which is so so soon!), where I usually have my own car, and it tends to be a slower paced weekend.  I won't inconvenience anyone when I need to take a break. I need to make more of an effort, I know that.  And if I cancel on you once or twice, don't take it personally.  It's probably jus

The last month has been a little crazy, some good, some not so good. On the good side, I surprised my brother for his birthday with a trip to Nashville!  I coordinated with his girlfriend, and walked into the restaurant they were eating dinner at the night before his birthday.  I think he was surprised, and we had a fun weekend together. I hadn't seen him since November. My room has been painted and cleaned!  Or maybe the other way around, cleaned and then painted.  I am not a neat, organized person when it comes to clothes.  I have too many, and probably half of my clothes are either too big, or too small from all these weight fluctuations.  I gave away two big garbage bags of clothes to my neighbors (3 girls ranging from 14-25, and their mom). I'm still working on decorating, but I love the color! I also volunteered at a 3 day conference for high school sophomores.  I went to the same conference as a teenager, and met most of my close friends through volunteering. It wa

Warmer weather, which is hopefully on it's way to the northeast.  I can't wait to wear dresses without leggings, and sandals! Martha's Vineyard vacation this summer with friends, as always.  One of my favorite weekends of the year!  This year, we are going for a week! Half hour long phone calls with a certain friend that never fail to cheer me up. Volunteering for an organization that I've been super involved with in the past, but have taken a few years off.  I'm getting back into it this year by volunteering at the 3 day conference!  I am a little worried that it will be too physically taxing, but I want to try.  Dating?  Maybe?  I'm out there on all the dating apps apps, and tried a month of Match.com...I haven't had much luck but we'll see what happens.

Today is the last day of this Cushing's Awareness Challenge.  I want to reflect back on the month, finish up any stories I didn't finish yet (I know there's at least one), and share a few of the favorite posts from the month in case you didn't see them.  First - in unfinished business - I still haven't had the correct PET scan, or heard back from the doctor who ordered it. I have a scheduled appointment with him in June, but would rather not wait that long.   I saw my new primary care team this past week!  I am so happy with the new situation, and hope that this team will be taking some of the workload off my plate, just by being in the same system as my specialists.  I am usually the one coordinating care, making sure everyone is staying updated, correcting lab orders, because my health is literally in my own hands, but having an actual M.D. helping should make things a little easier on everyone.   Your Favorite Posts: Day 4 - I Wish I had Cancer Ins